Sufferer Childhood Medical Treatment Or Sexual Abuse

[Mit]

Hello - The title of my introduction is intended to describe my confused perspective, and hence why I have decided to seek the wisdom of others in my attempts to make sense of my issues.

I was born with a medical condition called hypospadias. This results in the penis not forming properly, it's mildly genetic, but other causes are also suspected (but unproven). It is sometimes thought as an intersex condition. It can be quite mild, causing few problems, or more severe requiring surgery.

My hypospadias was very severe, to the extent that at birth my sex was unknown. I started having reconstructive surgery when I was 3 years old, in the mid 1960s. I believe the plan was for two to three operations to 'fix' the problem. Alas things didn't go to plan. Surgery continued over 13 years, until I was 16, about 30 operations in total, all on my genitals. There were many events that upset me, and apparently I experienced as trauma. Some of these were 'normal' medical experiences (needles, foul tasting medicines, feeling abandoned by my parents) but many were solely focused on my genitals, and always required my exposure. A small number of 'procedures' carried out on me were so odd, that I suspect these days they wouldn't be allowed. If they were done to a child today I think they would be considered abuse. Finally at age 17 I was pronounced fixed and told to get on with my life. Nobody knew of the issues I was harbouring inside.

I realise now, that I experienced these procedures as humiliating, shaming and in my adolescence 'quasi sexual'. At no point in the 13 years over which I had repeated operations did I receive any psychological support of any kind. It may or may not be relevant but I was given up for adoption at birth and adopted when I was five.

At some point (from adolescence onwards) my psycho-sexual development became distorted and I developed some 'unhelpful' sexual coping strategies. This took the form of sexual self harming and sexual masochism. I was also frightened of relationships with the opposite sex because I feared they would be horrified, or laugh at my genitals. I had my first relationship at age 29, and second when I was 35. I now have two teenage sons, one of whom was born with hypospadias.

But throughout both relationships I maintained a secret sexual life involving self abuse and abusive fantasy, which I now understand to be my re-enacting or acting out what I perceived to be traumatic and abusive acts. Four years ago this caused me and my family huge problems and I attempted suicide. In the aftermath I had some counselling and I was diagnosed with 'complex trauma'. The counselling I received was very general and short lived. We never really got to the heart of why I had developed coping strategies, and still live them now. I suffer from anxiety attacks and depression, and have suicidal thoughts, although this is probably linked to events of four years ago rather than my childhood experiences.

I have researched for this type of reaction to the type of medical treatment I received but only found one other case of a child reacting to surgery on his genitals in a way not dissimilar to me.

I hope anyone who reads this will understand my struggle to understand what happened and why I reacted In the way I did. All the medical staff involved had my best interests at heart I am sure, things were done differently in those days. So I don't say I was abused. But I fear the child that I was at that time did, for all those years experience the treatment as trauma and abuse even though it was not intentional. I just can't resolve it, or seem to get better. Sorry for the long post and thanks for reading it.

 

[scout86]

It seems understandable that all that would be experienced as "abuse" by a child. It sounds like it was horrible. And then to have been given up for adoption at birth besides? All by itself, I can see where that would cause a kid to question their value in some situations.

The intent of the medical profession important to where you are now. How you perceived it is what's important. This is a lot for a person to work through, and I would think it would be very difficult to work through all on your own. So, is therapy an option?

Welcome to the forum! And well done for telling a difficult story so well.

 

[Anarchy]

Welcome to the Forum Mit,
And I'll second Scout's praise for your courage in sharing such a difficult and distressing story so well.

Any of the situations in which our normal fight, flight or freeze instincts fail, and we are rendered powerless and defenceless seem to have very high potential to cause lasting trauma responses which are poorly adapted to everyday life.

You've suffered an abundance of those.

This site is safe, there are good helpful and caring people here, and there's always someone around.

Being "given up for adoption" is very relevant. even a prompt transfer to adoptive parents at birth can cause abandonment trauma in the newborn which manifests as abandonment issues and emotional flashbacks. I spent 7 years in boarding school living in close proximity 24/7/56 at a stretch, with a lot of people who'd been adopted, and with hindsight, I could tell they were different. now that I know something of C-PTSD, I a better idea of why.

I'm no expert on how to get blood out of stones or help of any sort of use out of the NHS.

As a reading resource - have you visited Pete Walker's CPTSD site?

Are you working, can you afford to see a therapist privately?

You have a diagnosis, there is an NHS program called IAPT (increasing access to psychological therepies), Your GP might be able to get you some referals -

Although "my trauma is bigger than yours" comparisons are a complete and total no go area and outrage, I will say that with a case history like yours, there must be good trauma therepists out there who would help you at negligable cost, or charities or donors who could help.

Best regards

 

[Lucycat]

Hi @Mit and welcome to the forum.

My friend's son was born with hypospadias so I have an understanding of the condition. Her son is now a young teenager, but all his surgeries were pre-school. I guess things have changed over the years.

Both the repeated surgery and the adoption are reasons for you to feel traumatised. However successful the adoption, there is always the background of 'why?'.

I agree with the others who suggest further therapy for you. I would recommend specific trauma focused therapy. I know the NHS often puts a time limit on it, but I have been getting NHS therapy for almost 5 years now. For me it has been incredibly helpful, but it is very slow progress. Your life is worth putting yourself through this and pushing for more help.

 

[Friday]

My son was in & out of a Children's Hosp for several years as an older kid (pulmonary issues). When you're living at the hospital for weeks/months at a time? You really get to know other parents and medical staff.

Yeah. You're not weird or strange or uncommon, man. The docs & psychologists & parents are fighting a constant uphill battle with kids' perceptions of themselves, their parts that are causing them pain & suffering, the constant fear of death & bad outcomes, pain, depression, anthropomorphizing, self blame, meltdowns, suicidal impulse, fear and self loathing, anger, etc.

Most of the 'public' view of sick kids is how happy and how tough they are. And they are. More than any other population, kids are freaking amazing. But they hurt. And they collapse, break, melt down, want to die, suffer, all of that as well. Everyone has a teddy (or similar, lol, knew a 14yo girl who had hand cuffs as her "lovey", but most have a special blanket or toy or something). Everyone has bad days, bad times in almost every single day, and complete breakdowns, and, and, and. Esp hard with preteens and teens, because they also have the 'never going to be ______' (whole, kissed, married, loved, themselves, have a chance, regret, etc.) on top of all of the normal stuff that little kids and adults also feel. They bridge the gap, because they can see what they may never have a shot at.

You're not alone. Not by a long shot.

 

[intothelight]

@Mit Welcome to the forum!

It is tough for children to deal with illness and hospitalizations so I cannot imagine the struggle that you went through. Trauma therapy is very helpful for PTSD and I hope that you receive the help you are seeking.

 

[Mit]

Thanks for the warm and supportive messages, they are all very thoughtful and kind. Your collective wisdom has encouraged me to look into therapy again. I self funded 6 sessions with a psychosexual therapist (that was all I could afford, and it involved a five hour round trip to get to her) after the NHS therapist I saw told me my issues were too complex for a generalist. We focused on specific hospital experiences as the root of my trauma and tried EMDR, but the EMDR felt very odd, I don't think it was for me. With hindsight and after some research I think maybe we should have explored my reaction to the situations and treatments and my subsequent behaviour, rather than the events themselves. The therapist did try to get me to talk about my secret behaviours, but I just couldn't, I felt too ashamed and embarrassed and humiliated, and guilty. I have an awful feeling this is what I need to do, but the thought of opening up about my shameful and humiliating behaviours is too horrific to contemplate. I don't think I could do it. I have wondered if my adoption might have contributed in some way, perhaps made me more vulnerable. Two years ago, thinking it might help me, I applied for details about my adoption through the council social services dept. I filled in the forms and signed consents. I've heard nothing since, nothing at all. It was a big deal to take that step, but I don't feel resilient enough to chase the social worker involved. I agree that the perception that kids are resilient is flawed. It seems to me childhood trauma get's buried and comes back later in life, sometimes with a vengeance. Your thoughts are helpful and encouraging to me. Thank you.

 

[Anarchy]

Hi @Mit
I've seen a few conversations here by people who are terrified about admitting to their therapist that they do things like self harm, and others who have finally built up enough time and confidence in the relationship with their T and done so, and are hugely relieved at the T's response. I can understand your fear, and reluctance.

I've never looked far into this, but I'm aware of studies showing differences in sexual function, activities etc, between men who've been circumcised and those who haven't, for example circumcised men seeking more oral and anal sex, being rougher and making longer thrusts, inserting objects into their urethra etc, and IIRC being more likely to have fetishes.

In the little that I've read, this was hypothesized to be due to the complete absence of the sensory inputs from sensitive areas within the foreskin and frenulum, and loss of sensation due to the toughening, drying and keratinization of the glans (which evolved to be an internal organ), and the men needing to stimulate their sympathetic nervous systems more to trigger the desired responses.

I don't know whether anyone has looked to see whether a trauma respons could explain those observations - it may well do. I think it was (and may still be) usual to inflict circumcision on small babies with zero or minimal pain relief, and I think that there is good evidence of the immediate emotional effects of that on both infant and mother.

Since I became aware of that literature, I have started to notice that, for example the references to sex in American college humor genre films is very different, and implicitly circumcision orientated, when compared to teenage references to sexual practice in Europe where circumcision is far less frequent.

One insight that I have just picked up -is that trauma results in repetitive and ritualized activities which re-enact the trauma, time after time, eg a child who has no conscious memory of sexual abuse, will when given anatomically correct dolls, re-enact in play, exactly the activities recorded by their abuser in a porn video they made of the forgotten event.

Given the number of operations, and amount of pain, scarring etc which you have received, and your entirely justified worries, not only about the repeated surgery, but about being accepted, compared to the single event of circumcision,

I think it would be highly abnormal for you to have gone through that without it having big psychological effects on you.

I hope this helps you (please let me know if it isn't helpful). I would hope that a T who knows their field would be expecting and ready for you - when you are comfortable and safe enough in the therapeutic relationship for you to begin to share.

Big hug if you'll have it.

----------------------------------
added
I wonder if the ritualized repetition of trauma is why abuses like bullying, kiddy fiddling and male and female genital mutilation* are so damn persistant.

* I do put them in the same category, I don't think either should be minimized or excused.

 

[Mit]

Hi Anarchy, FridayJones and others - thanks for the thinking. Anarchy the hug is very welcome, thank you. I don't know if others feel this way but when I get a message, people making suggestions, being helpful and kind, and discussing my problems....I get adrenaline rushes and anxiety, and tearful. It's wonderful and frightening at the same time. Sorry, I'm not used to the openness on display around here.

Your comments are very insightful, and yes helpful, and they are very relevant, to me at least.

Loss of sensation is an issue for me too, as a consequence of the extensive and repeated surgery. I didn't realise just how bad it was until I had my first sexual relationship when I was 29. I was surprised and disappointed, and wish I had been told or warned. My pattern of behaviour was already engrained before my first sexual experience, so in my case the lack of feeling wasn't a trigger. I had a huge need to humiliate, hurt and punish myself - I can't explain why as an adolescent I felt like this, but I know throughout my childhood surgeries I felt I must have done something wrong to deserve it. I have a suspicion I felt the same about being given up for adoption. It is nonsensical I know, all in the mind of a child.

I have also read about the tendency of trauma suffers to re-enact the original experience, which simply perpetuates the distress. Strangely, I still act out, even though I know the source of my trauma and I am aware re-enacting isn't a solution. I am guessing that in my case the 'sexual' component has a strongly addictive element, and so it has become habitualised and addictive. I can honestly say it doesn't make me feel good about myself, I always feel low after humiliating and/or hurting myself. I'm trying to work up strategies to help me desist, it's a battle, and I hate myself for being so weak. I am sure you are right in that the tendency to re-enact (which I think perpetuates the original trauma) is partially responsible for repeated abuse inflicted on victims. It's no excuse, but helps inform an understanding, and ought therefore contribute to better interventions and treatment.

Just being able to open up a bit is a relief, it seems easier to do here than in person, and so far I haven't felt judged (which has occurred in the past). I'm always surprised at how little I can recall of the endless operations throughout my childhood, it was suggested to me that as a child I had blocked much of it out. But there are a handful of experiences I do very clearly recall which really bother me now. I didn't say anything at the time because they were carried out by clinical staff who were trying to help me. Would it be ok to describe these (without being graphic or offensive) do you think? I think it would help me to know how others might perceive these treatments and events. It's not about right or wrong, I just want a better understanding of why I reacted in the way I did.

I am really grateful for the care and kindness shown towards me on this forum. I hope I can be as helpful to others.

 

[scout86]

Would it be ok to describe these (without being graphic or offensive) do you think? I think it would help me to know how others might perceive these treatments and events

Speaking for myself, I don't see where it would be a problem. The general idea here is "if something bothers you don't read it." Otherwise, sharing things is fine and it IS helpful. It's amazing how often we live thinking we are the only one in the world with a particular experience and reaction and I have yet to see that be true.

It's not really "nonsense" for a child to think that everything is their fault. (You're being too hard on yourself and expecting to much from the child you were, and the children we all were.) That's the only way a small child really HAS to understand this stuff. According to my T, we come pre-wired to expect out needs to be met by our caregivers. When things don't work that way, it's easier and safer to assume the problem is with us rather than with them. That way of looking at things turns out to be pretty hard to get past, even as an adult who, theoretically, "knows better".s

I hate myself for being so weak

I seriously doubt this has anything to do with being weak. It can be really hard to give up the only coping mechanisms you know, even if they aren't "good". It helps to have something to replace them with. (I've been working on replacing "alcohol" with "ice cream". Ice cream may not be a totally healthy choice either, but I like it enough that it serves the purpose. Actually, just telling myself that I could have ice cream instead, if I want it, is usually enough to change the thought cycle.)

It's wonderful and frightening at the same time.

Yep, it sure is!

 

[joeylittle]

Welcome, @Mit. I just want to echo what Scout said - you can post about whatever you like; we don't have trigger warnings. You might want to see if you feel a connection to any of the trauma-specific subfora - there's one for medical specifically. But really, everyone and every kind of trauma is welcome here.

 

[Mit]

Thanks for being so supportive. I'll try to be brief otherwise this will be a war and peace effort. The first events are more routine which still trigger tears and anxiety when I recall them. This started when I was three, but my earliest actual memories are from around five years old:

Pre-med. The pre-med I had to drink before going to theatre smelt and tasted so bad that it always made me vomit. I can remember fighting with nurses grabbing their wrists, and them grabbing mine and forcing the cup into my mouth. The stuff would go everywhere, as would my vomit and was repeated until they thought I'd taken enough in. At age 10 I pleaded with them to give me something else and was offered injections instead. I agreed, in spite of my fear of needles. My parents had no idea this happened prior to every operation.

Removal of stiches. For a period, before they used dissolvable stiches I had to have stiches removed from my penis. I remember being held down and the tugging sensations and feeling of the stitches pulling through my skin. I was always petrified before they did this. There was some pain but the raw fear was worst.

Urination after surgery. Once the catheter had been removed I would be walked up to the toilets to pass water. I recall standing at a urinal trough, naked form the waist down with a nurse. I would tremble and cry because I knew how much it was going to hurt. I often couldn't go and we would walk back to my bed. I would have to drink more. In the end I wouldn't be able to hold it in. The best description I have heard is 'like passing broken glass'.

Cleaning and examinations. The wound on my penis would be cleaned by a nurse every day. They were usually very careful, so the pain wasn't too bad. But as I got older having to lay with my genitals exposed made me feel weird and uncomfortable. Every so often I would be examined by a team of doctors, nurses and junior medics during ward rounds. I remember many faces looking down at me, as I lay exposed and they touched my genitals. This became more bothersome as I got older. By the time I was 16 I hated it. This routine was so frequent I feel very strong emotions when I recall it.

Removal of the catheter. The nurse would cut the stitches holding the catheter in place where it entered my bladder. She would then pull the tube out, slowly. It burned and felt unlike any other sensation I know, but seemed like my insides were being pulled out.

some more unusual procedures:

I was stripped and had to repeatedly pee in front of a nurse as she tried to mark the location of the fistula (leak) on the underside of my penis with a pen. Stopping and starting peeing was hard, and we both ended up covered in urine, and she was cross with me. It took several attempts over a number of days until she thought the site of the leak was marked. I was about 11 years old.

Having had my penis cleaned after surgery the nurse said I had to be sprayed with a freezing aerosol (normally used for muscle strains). The can was held only inches away from my penis and I was sprayed. She continued for several seconds until I shouted and pushed her hand away because it was burning. I believe this was done because they were worried I might have an erection and damage the skin graft. This was done each day after I was cleaned. I was mortified the nurse thought I might have an erection, and felt humiliated and vulnerable each time. This has happened during surgeries when I was 14 and 16, over a period of several weeks.

During one surgery sutures were wrapped around my penis to hold a dressing in place that was securing a graft. During the night my penis swelled, or I had an erection (not sure which) and the sutures cut into the skin. I was too embarrassed to tell anyone, despite the pain. By the morning the sutures were completely buried into my skin. I cried to a nurse in the morning about it and they were cut out by the ward sister.

I was taken to room on my own. A medical photographer took pictures of my genitals, I had to strip and adopt certain positions and hold my penis out. Whilst his lens was inches from my penis he told me to 'smile'. I was 14 or 15.

There's more but that's enough. I'm sorry to have written so much. This is very raw and I am frightened compared to other peoples traumas this will seem trivial and pathetic. My parents were not present at any of these times. I have written this down before but not shared it, it doesn't help, I think I need somebody to read it. I would be glad to hear if others think these types of things, over 30 operations may/would have affected me. I know this isn't abuse so I feel guilty about complaining. I'm sorry.